Okay I will try to make an extremely long story short!!
When I was twelve years old (I am now 18), I was diagnosed with reflex sympathetic dystrophy with the result of a bad bicycle accident. After six years of having test after test ran on me, every doctor told me nothing was found. Well about a month ago I went to a new doctor and he told me that I have spina bifida and that I've had it since I was born without a doubt. He told me there was no reason for the other doctors lying to me. Well I have called every doctor that I've been to and asked them to see my x-rays and I noticed it for myself, they still insisted that I had nothing wrong, when in fact I do have spina bifida.
So my question is... where do I go from here? I'm tired of being in pain all the time and I've never had pain medication. Are there doctors that treat mainly spina bifida? I just don't know where to go from here.
NINA AND MARCIS = TRUE LOVE FOREVER
I was born with a spinal cord disorder that has been related to spina bifida. All I can recommend is you have your primary dr. refer you to a neurologist and/or a pain management specialist. Or, depending on the severity of your condition, perhaps even an orthopedic neurosurgeon. I'm sure your dr. will know which specialist is best for you.
Good luck in your search for good medical care.
I know this message is a littel late but I just joined this message board today.My daughter was born with spina bifida and from experience I can pretty much tell you that a Neurologist will not be able to do much for you.The two most important Doctors you will need are a Neuro Surgeon and Orthopedic Surgeon....also Spina bifida is well known for causing kidney and bladder problems or weakness ( not necessarily always),but if you have dealt with any issues involving your kidney or bladder I would also recommend a Urologist.Hope this helps a little and good luck.Kimmie
I am not a doctor, but there's spina bifida and spina bifida occulta. The latter is a whole different ball of wax from the former.
This is true for most cases of SBO. However, there are some cases of SBO that have the same complications as open spina bifida. Its hard to say what kind of help you should seek without knowing the level of your congenital abnormality. Mine is L4 to S1 and I have tethered cord and Chiari malformation. I was not born with open spina bifida. I was however, born with a deep lumbar-saccral dimple. I still went undiagnosed until I was 30. So while 90% of SBO is not harmful there is about 10% that has similar issues as open spina bifida. I think it is important to becareful not to generalize in a health forum. If you have been diagnosed with SBO and you have no back pain or any other symptom it was what they call "accidental diagnosis" and have no fear it will probably be asymptomatic through out your life.